I’ve always wanted to go to DC…

…but never thought my first time would be for a doctor’s appointment.

Oh, where to start? I have every intention of keeping up on this blog, but as always, the craziness of life seems to get in the way. In any case, a lot has happened in recent months and I thought it was a good time to share. If you’ve been reading my blog, you remember that at the beginning of this year, I started my first Lyme Disease protocol. Around the time I was diagnosed with several tick-borne diseases (including Lyme and Rocky Mountain Spotted Fever), I also discovered I had dysautonomia, hyperadrenergic postural orthostatic tachycardia syndrome (hyper POTS), mast cell activation syndrome (MCAS), possible chronic regional pain syndrome (CRPS), and many other more “minor” issues (relatively speaking, of course). Is your head spinning after reading the terms above? Mine is. I had never heard of any of these things until the last year or so and I’m still trying to get my head wrapped around it all. As mentioned in previous posts, the protocol I started earlier this year was intense – around 200 pills/tinctures/powders/etc. per day, at an insane out-of-pocket cost. I was on high doses of the antibiotic doxycycline, and later added azithromycin, which at those doses and for that amount of time, are hard on anyone’s body. However, when you have been sick most of your adult life, you will try just about anything in an attempt to get better.

When starting the protocol, I also went on an incredibly strict low-histamine diet for 100 days (which my wonderful hubby followed with me). This was to see if it would help the MCAS. I have been on many restrictive diets over the past 2 decades, but this was by far the hardest. Truly, the most severe low histamine diet you can go on is to eat nothing but chicken and rice. And what I found is that no matter how many different websites I looked at to define what this diet should look like, they were ALL different. It was so confusing, and took a bit of trial and error. The common thread was to eat only super fresh organic grass-fed meats, some veggies (and for the ones you can eat, only organic and freshly cooked), no fermented foods, no balsamics or spices, no left-over foods, no spicy foods (my favorite!), nothing cured or aged, no seafood, no alcohol, no dairy, no sugar, no black pepper, no nightshades, etc. The list goes on and on, but bottom line, we were pretty much eating plain chicken, rice, sweet potatoes, and kale for 100 days.

As someone who is a food fanatic, and owns a gourmet food company, this was about as torturous as it gets. Somehow, we made it through. But honestly, I didn’t feel any better. The only thing I noticed is that my neck flushing (part of the MCAS) improved ever so slightly. As positive as I was trying to be, I had a strong inclination that this diet change wouldn’t do much to help my symptoms. A few years back, I asked my then pain specialist if I should do more with my diet than be gluten and soy free (which I have been for over 8 years), and her answer was basically…”Lisa, given how sick you are, those changes just aren’t going to make a significant enough difference to make it worth it”. I gave it the old college try anyway, but slowly started introducing things back into my diet, and I agree, I’m not sure it made any difference. If I was certain that giving up the food I love, for let’s say a year, would make me feel even 50% better, I would do it in a heartbeat. However, I have been told too many times that my body is so severely impacted by these diseases/syndromes/conditions, that food just isn’t the magic bullet. We already eat mostly organic, non-processed, whole foods; and given my love of food, cooking, entertaining, etc., I know I need some “food-joy” in my life.

After five months of the protocol, it was coming upon the summer arts & crafts “show” season for my food business. Knowing how incredibly nauseous and weak the medicines and supplements were making me, I knew I had to take a break from the meds mid-June through at least the first part of August. How frustrating to finally work up to 7 doxycycline (never made it to the prescribed 8) and 2 azithromycin daily, with over 100 other supplements and prescriptions, only to have to quit cold turkey with no marked improvement in any of my symptoms.

Thankfully, my incredible husband (Joel), cousin (Matt), and cousin’s son (Benn) did so much to help get things ready for the shows (loading in and out, and helping to sell the pants off our products), I couldn’t have done any of it without them! I still went to the shows every day, although not always for the entire day. It was hard keeping my erratic blood pressure in check with all the energy I was expending (darn POTS!). For example, one of the days after our show was over, my blood pressure was 226/131. And like always, it went right back down once I laid flat for an hour or so. It’s unbelievably frustrating and life-altering to constantly worry about how standing, talking, or doing just about anything active can have such scary and severe consequences.

After going off the 5+ months of my protocol, I was feeling closer to how I felt prior to treatment – not great, but not nearly as nauseous and weak. I felt more like my previous sick self vs. my new “treated” sick self. However, a brand-new symptom started late spring and has been one of the most painful yet. It was the last week of May when I started noticing that if I brushed the top of my hands against anything, they felt almost raw to the touch. There really weren’t any other symptoms at that point, so I merely thought it was some weird fluke. Let’s face it, my body has a new fluke just about every day. What’s new?

The slight tingling progressed to a more uncomfortable feeling whenever I would accidentally brush them against something rough. It had been weeks and it still felt like the worst sunburn I ever had, yet at that point, there was no redness. By the time mid-June rolled around, and we were at our first show in Edmonds, my hands had turned a deep purplish-red and felt as if someone was holding a lit match to the top of them. Both the Saturday and Sunday evenings after our shows that weekend, it took all I could not to go to the ER. The pain was excruciating. I was in tears (which is not a common occurrence for me). I tried every topical ointment that I could get my hands on (CBD, prescription ointment, over-the-counter salves, etc.), but nothing seemed to help. This went on for months and has still not healed. At this point, my hands usually only get red in the evenings, but anything touching them still causes pain…even when my adorable 8-pound Chug (Chihuahua-Pug mix), Abbey, licks my hands out of love. This is what led my internist to suspect possible CRPS, which incidentally, is considered the most painful disease/condition in the world. Sigh…

Once our summer shows were over, it was time for me to meet with my Lyme doctor and find out what I should try next. Here’s where I got the news I wasn’t expecting. My Lyme doctor is considered one of the best (if not the best) in the Pacific Northwest, and I truly believe she cares about my situation very much. During our phone appointment in August, she more or less said that she didn’t feel that she could continue to help me. She said that about 10 percent of her patients had progressed to a point where they needed more treatment than she could administer. I commend her for having the wherewithal to know the limits of the protocol she prescribes, but at the same time, I was scared and felt even more alone. I had been turned down by so many other doctors, and even had Mayo tell me I was too complicated of a case. What now?

This is how I found myself in Washington DC this past week. When my doctor said she could no longer help me, she referred me to a doctor in Washington DC. Interesting that I’ve always wanted to travel there, but never thought it would be to see a doctor. There is a Lyme clinic there that is apparently world-renowned, with about 10-12 doctors, and a board-certified Lyme MD running the show (board certified MDs that focus on Lyme are a rarity because of the controversy surrounding the disease). It was a big decision to travel this far, but being at a cross-roads once again, I didn’t really feel I had a choice. When I asked my doctor what she thought would happen if I just stopped trying to treat altogether, her answer was that I would be permanently disabled within the next 10 years. So, we packed up our bags, gathered up all my medical documentation, filled out a 31 page new patient intake form, and headed out on last Monday for the big trip.

While Washington state really isn’t that far from Washington DC by plane, when you haven’t flown in over 2 years, it’s kind of a big deal. With my erratic blood pressure problems and frequent shortness of breath, as well as knowing how painful flying is for me, I’m not gonna lie…I had some anxiety going into this flight. My doctor helped me secure portable oxygen tanks for the plane, as well as make sure we had a plan to make it as comfortable as possible. The flight on Monday was ok (way better than the one home), but the pain that hits me the day(s) after flying makes the whole process grueling.

After relaxing in bed on Tuesday, I was as ready as I could be for my appointment. What should I expect from a 3-hour deep dive into my complete medical history? Were they going to think it was all in my head (like so many other doctors had) or were they going to really listen and come up with a new protocol that would give me a fighting chance? Thankfully, not only did they listen intently, they reiterated what my current Lyme doctor in Seattle has said over and over again – “You are extremely sick, we don’t know how you are still functioning, how are you not depressed, and without more rest/sleep, you will never get better.” I can’t reiterate how many times this doctor in DC told me that I need to regulate/modulate work and cannot continue to push myself this hard…as I sat there and and thought to myself that it’s nearly impossible to slow down with my growing business. And the tough part is that I don’t want to slow down!

While she agreed my Type A personality traits have helped me get through my condition thus far, I’m not going to get better if I don’t figure out work-life balance. Oh, the irony! When I left my corporate job almost 2 years ago, my whole goal was to have balance (i.e. no work): however, instead of taking a couple of years off as planned, I bought a company that is growing at a rapid rate. I love it! I love my work! I love what we do! It’s my dream job! And after over 20 years in the corporate world, I have something that brings me so much joy. Yet, it is hindering my progress according to my 2 doctors in Seattle, and my new ones in DC.

Back to the appointment, where I had an a-ha moment right at the start. I have always suspected that the Cephalexin I took in 2002, just a couple of days before all of this started, was the reason I first became ill. I figured that it triggered something in my body, but never had a clue what that something could be. The doctor said it was probably my very first herx (Herxheimer Reaction). Finally! Something that made sense to explain why this hit me like a ton of bricks at age 26! Cephalexin is in the same class of drugs as other meds used to treat Lyme Disease. If the antibiotics kill the Lyme faster than your body can rid itself of the toxins, it can cause a herx reaction, which can throw a person off for days, weeks, or more. It is entirely possible that the very short dose of Cephalexin that I was on back in 2002, was in fact my first unintentional treatment against the Lyme. Unfortunately, no one figured that out at the time.

After that a-ha moment, an hour-plus of detailed questioning, and then a physical exam, there were several issues that came out as my highest priorities to focus on first.

• My pain (nerve, muscular, joint, regional “don’t touch me pain”, etc.),
• Lack of restorative sleep (for years),
• Severe dysautonomia/POTS (total lack of a working central nervous system),
• MCAS (which causes a histamine response to anything and everything),
• Intense skin and overall body sensitivity,
• Total numbness on the top of my feet,
• Abnormal reflexes,
• Extremely mottled skin (my face is olive toned, but legs and arms are pink, blue, and purple),
• Reynaud’s syndrome (fingers that burn, tingle, and turn blue/white when cold),
• Lack of ability to digest food,
• Swollen and cherry-red joints,
• Unbearable back pain with no structural issues (due to Lyme settling there)
• and much more…

After spending a couple of hours with the doctor that was assigned to me, she brought in the primary doctor (and namesake of the clinic), who was originally a very well-known HIV doctor back in the day, but shifted his focus to Lyme when the epidemic began to surface years ago. I pretty much expected him to come introduce himself, say “yep, you are pretty sick”, and go on his merry way. However, he spent time asking me questions and did an examination as well. He also brought up an entirely new condition that I should be tested for – because of my erratic blood pressure and constant nasal drainage/sinus issues, he expressed concern that I may have Cerebral Spinal Fluid Leakage. The kicker? There are only a few places in the US that are able to test for this – Duke, John Hopkins, and Cedar Sinai being the most well-known. This means Cedar Sinai…here we come! Not sure what this will entail, but I’m pretty sure it will include a spinal tap, which does not sound fun at all.

As I was getting ready to schedule my next appointment, the doctor who performed my entire examination said that because I am such a complicated case, they decided I should be seeing the primary doctor (and founder/owner of the clinic) going forward. In part, this is a good thing, but it also scares me to think I’ve already graduated to the “big guns. He said if Plan A doesn’t work, we will go to Plan B, Plan C, and so on…i.e. a long road ahead, on top of what has already been almost 2 decades.

At the conclusion of my visit, the doctors reiterated that I’m too sick to start a new protocol. Not surprising. My internist has been saying this for months. Basically, until my sleep and pain are under better control, not only is there no use starting the protocol, I probably wouldn’t be able to bear it. My guess? 4-6 months of trying to get my body to a state where it can take the treatment. The hard part? They want me in DC every 5-6 weeks for the next 1-2 years (or how ever long it takes to be treated). I naively thought I could have my PICC line (IV antibiotics) administered in Seattle, but nope – it has to be at the DC clinic so they can monitor my progress and reactions to the medication changes. Since flying causes more pain and heart racing/high blood pressure, this wasn’t great news? I don’t know if Joel will be able to go with me every time, but I can’t imagine doing this alone.

Despite how I’m feeling about everything right now, I would like to end on a good note. If there is one thing I have learned throughout this whole experience…I’m not alone. If anything good has come out of this, I have seen a tremendous outpouring of love, support, and prayers from friends and family alike. I’ve never been one to ask for help, but just the simple acts of kindness I’ve received, such as bringing me supportive books to read, spiritual and uplifting conversations about life, spending Tuesday evenings with two of my favorite gals, loved ones starting prayer circles for me, people bringing me flowers, friends allowing me the option of 2AM calls and coming all the way to Whidbey to visit me, neighbors helping with the dogs/mail/coffee deliveries, my right-hand man picking up extra stuff at work, and family sending guardian angels my way has been more than I could ever ask for.

My next appt. is a follow up phone call in January to review blood test results and whether any of the new medicines (no antibiotics yet) are doing anything to help sleep and pain. Fingers crossed. Until next time…